Investigating the Effects of Transdiagnostic Processes on Anxiety and Depression Symptoms in Autistic Young People: the Mediating Role of Emotion Dysregulation.

Internalising symptoms are elevated in autism compared to the general population. Few studies have investigated emotional dysregulation (ED) as a potential mediator between specific transdiagnostic processes and anxiety and depression symptoms in autistic youth. In a sample of 94 autistic young people aged 5-18 years referred to a specialist clinic for an autism evaluation, we tested the effects of ED as a mediator between cognitive inflexibility (CI), intolerance of uncertainty (IU) and alexithymia with anxiety and depression symptoms, using structural equation modelling. Effect sizes were compared to a non-autistic comparison group (n = 84). CI and alexithymia did not significantly predict depression symptoms in autistic young people, directly nor via ED. Relationships between CI/alexithymia and depression were fully mediated by ED in the non-autistic sample. There was a direct effect of CI on anxiety in the non-autistic group but not in those with a diagnosis. IU predicted depression symptoms in the autism group; and ED mediated this relationship only in those who did not receive a diagnosis. IU directly predicted anxiety in both groups and this relationship did not occur via ED. The finding of a direct pathway from IU to anxiety and depression in autistic youth is consistent with the literature. The finding that CI did not predict anxiety or depression in those with autism is novel, as was the finding that ED mediated relationships between alexithymia and anxiety/depression symptoms in both samples. The findings may have important implications for the delivery of psychological interventions for autistic youth.

Screening for Attention Deficit Hyperactivity Disorder in Young Autistic Adults: The Diagnostic Accuracy of Three Commonly Used Questionnaires.

OBJECTIVE: Attention Deficit Hyperactivity Disorder (ADHD) is a common co-occurring condition in autistic individuals. ADHD is sometimes first recognised in young adulthood because ADHD symptoms may be misattributed to autism due to superficial overlap in presentation and diagnostic overshadowing. It should be investigated whether ADHD questionnaires are accurate in screening symptoms in young adults with autism. The current study examined this. METHODS: Participants were autistic young adults (N = 119) who took part in the Special Needs and Autism Project (SNAP), a population-based cohort. ADHD research diagnoses were obtained through the parent-informed Young Adult Psychiatric Assessment. Parents and young adults (self-report sample N = 71) completed ADHD questionnaires (Aberrant Behavior Checklist hyperactivity/non-compliance subscale, Conners Adult ADHD Rating Scales ADHD Index, and Strengths and Difficulties Questionnaire ADHD subscale). Receiver operating characteristic analyses were conducted to explore if the questionnaires discriminated ADHD cases from non-cases. To assess whether results varied by intellectual functioning, subgroup analyses were completed for those with an IQ ≥ 70 vs. <70. RESULTS: Weighted ADHD rates were high. Overall although the measures were performing at or close to adequate levels (area under the curve was 0.66 to 0.79 for parent-report and 0.70 to 0.65 for self-report), no single measure met adequate thresholds for sensitivity and specificity simultaneously. Tool performance was not different for those with an IQ ≥ 70 vs. <70. CONCLUSION: No single measure reported adequate performance for distinguishing ADHD from non-ADHD cases in this sample of young autistic adults. Use of current thresholds may lead to under-diagnosis.

How do autistic people fare in adult life and can we predict it from childhood?

This study describes social, mental health, and quality of life outcomes in early adulthood, and examines childhood predictors in the Special Needs and Autism Project (SNAP), a longitudinal population-based cohort. Young autistic adults face variable but often substantial challenges across many areas of life. Prediction of outcomes is important to set expectations and could lead to the development of targeted early intervention. Autistic children were enrolled at age 12 and parents reported outcomes 11 years later when their children were age 23 (n = 121). Thirty six percent of autistic adults were in competitive employment or education and 54% had frequent contact with friends. Only 5% of autistic adults were living independently, and 37% required overnight care. Moderate or severe anxiety and depression symptoms were found for 11% and 12% of young adults, respectively. Subjective quality of life was similar to UK averages except for social relationships. Using childhood IQ, autism traits and adaptive functioning meaningful predictions can be made of living situation, employment and education and physical health. Prediction was poor for friendships, mental health outcomes and other aspects of quality of life. Our results suggest that although young autistic adults face challenges across normative, social outcomes, they may be faring better in regard to mental health or quality of life. Childhood IQ, autism traits and adaptive functioning are most useful for predicting outcomes. After accounting for these factors, childhood measurements of behavioral and emotional problems and language offered little improvement in prediction of adult outcomes.

Psychiatric conditions in autistic adolescents: longitudinal stability from childhood and associated risk factors.

Autistic people experience high rates of co-occurring psychiatric diagnoses. Current prevalence estimates vary considerably due to an over-reliance on clinical cohorts and the longitudinal stability of diagnoses from childhood into adolescence is poorly understood. This study aims to provide prevalence rates of co-occurring DSM-5 psychiatric diagnosis for autistic adolescence and investigate, for the first time, the stability of diagnoses from childhood. Using a longitudinal stratified sample of autistic youth (N = 77; 13-17 years; 60% male), selected from a larger community-derived sample of those with pre-existing autism diagnoses (N = 277) weighted prevalence estimates of emotional (anxiety, depression), behavioural (oppositional and conduct disorders) and ADHD diagnoses were calculated based on semi-structured psychiatric interview. Prediction of adolescent psychiatric diagnosis based on childhood diagnostic status, sex, childhood IQ (both assessed at age 4-10 years) was tested. Emotional and behavioural disorders in adolescence were particularly prevalent, and significantly predicted by childhood disorder status. Attention-deficit/hyperactivity-disorder (ADHD) was prevalent but not predicted by childhood ADHD diagnosis. Neither sex nor childhood IQ predicted diagnostic outcomes. Autistic youth have high levels of co-occurring psychiatric conditions, which are broadly persistent across childhood and adolescence. Emotional disorders are particularly prevalent and remain persistent from childhood to adolescence. Greater diagnostic variability was found for ADHD with more adolescents moving across diagnostic thresholds.

Pathways to adaptive functioning in autism from early childhood to adolescence.

Adaptive functioning is lower in many autistic individuals to a greater extent than would be expected based on IQ. However, the clinical features associated with these difficulties are less well understood. This study examines longitudinal and contemporaneous associations of adaptive functioning in autistic youth across a wide ability range. Parent-reported autism symptoms, co-occurring emotional, behavioral and attention deficit hyperactivity disorder (ADHD) symptoms, and IQ were assessed in early childhood (M age 7 years; T1) and 6 years later in adolescence (M age 13 years; T2) in 179 autistic youth. Adaptive functioning was assessed at T2. Structural equation modeling estimated pathways to adaptive functioning from autism, and psychiatric symptoms at T1 and T2, testing whether associations were driven by continuity of behaviors from T1 to T2 or their contemporaneous effect at T2, or both, controlling for T1 IQ. Lower adaptive functioning at T2 was associated with higher T1 and T2 ADHD symptoms (ß = -0.14, and ß = -0.21) but not behavioral nor emotional symptoms at either timepoint. Lower adaptive functioning at T2 was also associated with lower T1 IQ (ß = 0.43) and higher social communication symptoms (ß = -0.37) at T2 but not T1, but the relationship with ADHD symptoms remained. Paths were not moderated by sex or IQ. Increased symptoms of ADHD, both in early childhood and contemporaneously, were associated with reduced adaptive functioning in adolescence. Co-occurring ADHD may be a modifiable risk factor for adaptive function impairments and should be routinely assessed and when present evidence-based treatments initiated which may benefit adaptive functioning outcomes. LAY SUMMARY: Adaptive functioning is lower in many autistic individuals to a greater extent than would be expected based on IQ. However, the clinical features associated with these difficulties are less well understood. In a community sample higher attention deficit/hyperactivity disorder (ADHD) symptoms, but not emotional or behavioral symptoms, in both early childhood and contemporaneously were associated with lower adaptive functioning in autistic adolescents. Co-occurring ADHD may be a modifiable risk factor for adaptive function difficulties in autism.

Homotypic and Heterotypic Continuity in Psychiatric Symptoms From Childhood to Adolescence in Autistic Youth.

OBJECTIVE: Despite the high prevalence of mental health difficulties in autistic youth, little is known about the patterns of developmental continuity and change in psychiatric symptoms between childhood and adolescence. Using a stratified community-derived sample of autistic youth (n = 101; 57 males, 44 females), within (homotypic) and between (heterotypic) domain associations between psychiatric symptoms in childhood to adolescence were tested as well as whether any continuities were moderated by sex, IQ, autism symptom severity, social economic status, or parental mental health. METHOD: Autistic youth were assessed for emotional, behavioral, and attention-deficit/hyperactivity disorder (ADHD) symptoms in childhood (age 4-9 years) and adolescence (age 13-17 years) using parental diagnostic interview. Unadjusted and adjusted (accounting for the co-occurrence of psychiatric symptoms in childhood) weighted models tested homotypic and heterotypic associations between symptoms in childhood and adolescence. Moderation of significant pathways was tested using multigroup analysis. RESULTS: Adolescent psychiatric symptoms all were predicted by symptoms of their childhood counterparts (emotional symptoms incidence rate ratio [IRR] = 1.06, 95% CI = 1.02-1.10, p < .01; behavioral symptoms IRR = 1.38, 95% CI = 1.21-1.59, p < .01; ADHD symptoms IRR = 1.11, 95% CI = 1.05-1.19, p < .01); the only heterotypic pathway that remained significant in adjusted analyses was from childhood emotional symptoms to adolescent ADHD symptoms (IRR = 1.04, 95% CI = 1.01-1.07, p = .02). Sex moderated the homotypic ADHD symptoms pathway; associations were significant in female participants only. Child IQ moderated the homotypic behavioral symptoms pathway; the association was stronger in youth with IQ <70. CONCLUSION: Results from this community-based sample suggest that psychiatric symptoms in autistic youth exhibit substantial developmental continuity and thus highlight the importance of early screening and intervention. Sex and IQ may be important factors to consider when predicting likelihood of stability of ADHD and behavioral symptoms.

Acquisition and loss of best walking skills in children and young people with bilateral cerebral palsy.

AIM: To explore factors predicting acquisition and loss of best walking ability in young people with bilateral cerebral palsy (CP). METHOD: In our population cohort (Study of Hips And Physical Experience) of 338 children (201 males, 137 females) with bilateral CP, age at achieving walking was recorded and walking ability predicted from early motor milestones. Walking was assessed at 5 to 8 years (mean 7y) and in 228 of 278 survivors at 13 to 19 years (mean 16y). Parent carers reported their view of any loss of best achieved walking. Factors potentially associated with loss of best achieved walking were explored: severity and type of motor disorder; intellect and communication; manipulative skill; general health and comorbidity; pain; orthopaedic surgery; musculoskeletal spine and lower limb deformity; weight; fatigue; mood; and presence of regular exercise regime. RESULTS: The ability to walk independently was reliably predicted by the motor milestone 'getting to sit and maintain sitting' by the age of 36 months (without aids) and 55 months (with aids). Forty-five per cent of the cohort never walked 10 steps independently. Not all who achieved walking without aids were still doing so by a mean age of 16 years, which was associated with later age at achieving walking and the degree of musculoskeletal deformity, as was the parent carers' report of loss of best walking. INTERPRETATION: In this study, development of musculoskeletal deformity was a significant factor in not maintaining best achieved walking by mean age 16 years, which is most likely to occur in young people whose walking ability is with aids over short distances or in therapy only. Prediction of future walking ability in a child with bilateral CP can be made from early motor milestones.

Exploring the impact of adolescent cognitive inflexibility on emotional and behavioural problems experienced by autistic adults.

LAY ABSTRACT: Autistic people experience high levels of co-occurring mental health difficulties. To develop more effective treatments, a greater understanding of the thinking processes that may lead to these difficulties is needed. Cognitive inflexibility, defined as a rigid pattern of thoughts and subsequently behaviours, is one possible thinking trait which has previously been associated with both co-occurring mental health difficulties but also other features of autism such as restricted and repetitive behaviours. Restricted and repetitive behaviours include repetitive movements, ritualistic behaviours, and/or highly focused interests. This study investigates the relationship between, cognitive inflexibility, measured using neuropsychological tasks, and emotional and behavioural problems across adolescence and early adulthood. Eighty-one autistic people who were recruited to be representative of the wider autism population were assessed at 16 and 23 years on measures of emotional and behavioural problems, with cognitive inflexibility, restricted and repetitive behaviours and verbal intelligence measured at 16 years. We used statistical modelling to investigate the relationship between cognitive inflexibility and emotional and behavioural symptoms at both timepoints while accounting for the possible relationship with restricted and repetitive behaviours and verbal intelligence quotient. Our results suggest that cognitive inflexibility may be an important factor associated with emotional difficulties across adolescence and early adulthood. This suggests that developing intervention approaches targeting cognitive inflexibility may be an important step in improving the mental health of those with autism.

The association of adverse life events and parental mental health with emotional and behavioral outcomes in young adults with autism spectrum disorder.

People with autism spectrum disorder (ASD) are at increased risk of developing co-occurring mental health difficulties across the lifespan. Exposure to adverse life events and parental mental health difficulties are known risk factors for developing a range of mental health difficulties. This study investigates the association of adverse life events, parental stress and mental health with emotional and behavioral problems in young adults with ASD. One hundred and fifteen young adults with ASD derived from a population-based longitudinal study were assessed at three time-points (12-, 16-, and 23-year) on questionnaire measures of emotional and behavioral problems. Parent-reported exposure to adverse life events and parental stress/mental health were measured at age 23. We used structural equation modeling to investigate the stability of emotional and behavioral problems over time, and the association between adverse life events and parental stress and mental health and emotional and behavioral outcomes at 23-year. Our results indicate that exposure to adverse life events was significantly associated with increased emotional and behavioral problems in young adults with ASD, while controlling for symptoms in childhood and adolescence. Higher reported parental stress and mental health difficulties were associated with a higher frequency of behavioral, but not emotional problems, and did not mediate the impact of adverse life events. These results suggest that child and adolescent emotional and behavioral problems, exposure to life events and parent stress and mental health are independently associated, to differing degrees, with emotional or behavioral outcomes in early adulthood. LAY SUMMARY: People with autism experience high rates of mental health difficulties throughout childhood and into adult life. Adverse life events and parental stress and mental health may contribute to poor mental health in adulthood. We used data at three time points (12-, 16-, and 23-year) to understand how these factors relate to symptoms at 23-year. We found that emotional and behavioral problems in childhood, adverse life events and parent mental health were all associated with increased emotional and behavioral problems in adulthood.

An organization- and category-level comparison of diagnostic requirements for mental disorders in ICD-11 and DSM-5.

In 2013, the American Psychiatric Association (APA) published the 5th edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5). In 2019, the World Health Assembly approved the 11th revision of the International Classification of Diseases (ICD-11). It has often been suggested that the field would benefit from a single, unified classification of mental disorders, although the priorities and constituencies of the two sponsoring organizations are quite different. During the development of the ICD-11 and DSM-5, the World Health Organization (WHO) and the APA made efforts toward harmonizing the two systems, including the appointment of an ICD-DSM Harmonization Group. This paper evaluates the success of these harmonization efforts and provides a guide for practitioners, researchers and policy makers describing the differences between the two systems at both the organizational and the disorder level. The organization of the two classifications of mental disorders is substantially similar. There are nineteen ICD-11 disorder categories that do not appear in DSM-5, and seven DSM-5 disorder categories that do not appear in the ICD-11. We compared the Essential Features section of the ICD-11 Clinical Descriptions and Diagnostic Guidelines (CDDG) with the DSM-5 criteria sets for 103 diagnostic entities that appear in both systems. We rated 20 disorders (19.4%) as having major differences, 42 disorders (40.8%) as having minor definitional differences, 10 disorders (9.7%) as having minor differences due to greater degree of specification in DSM-5, and 31 disorders (30.1%) as essentially identical. Detailed descriptions of the major differences and some of the most important minor differences, with their rationale and related evidence, are provided. The ICD and DSM are now closer than at any time since the ICD-8 and DSM-II. Differences are largely based on the differing priorities and uses of the two diagnostic systems and on differing interpretations of the evidence. Substantively divergent approaches allow for empirical comparisons of validity and utility and can contribute to advances in the field.

Is cognitive inflexibility a missing link? The role of cognitive inflexibility, alexithymia and intolerance of uncertainty in externalising and internalising behaviours in young people with autism spectrum disorder.

BACKGROUND: Internalising (anxiety and low mood) and externalising (aggressive or outburst behaviours, and irritability) difficulties are very common in autism spectrum disorder (ASD) across the life span, relatively stable over time and often associated with poorer quality of life. Understanding the cognitive mechanisms underlying internalising and externalising difficulties in ASD is essential for developing targeted supports and interventions. In the present study, we investigated established and less-researched cognitive factors hypothesised to contribute to internalising and/or externalising difficulties in ASD, namely cognitive inflexibility (CI), intolerance of uncertainty (IU) and alexithymia. Based on previous models and clinical experience, we hypothesised that IU would lead to internalising symptoms, with alexithymia contributing to this pathway, and that CI would have a direct effect on externalising behaviours and may indirectly contribute to internalising symptoms via increasing IU. METHODS: Our sample consisted of 95 5- to 18-year-olds presenting to a specialist neurodevelopmental clinic and receiving a diagnosis of ASD. Parents/caregivers completed questionnaires assessing ASD symptomatology, internalising and externalising difficulties, CI, IU and alexithymia. Structural equation modelling was used to examine the hypothesised pathways and relationships between the main variables of interest. RESULTS: Cognitive Inflexibility played a significant direct role in the pathway from ASD symptoms to externalising symptoms in ASD, and indirect role via IU in the pathway to internalising problems. Relationships between alexithymia and both internalising and externalising symptoms were weaker, with alexithymia predicting internalising difficulties via IU only. CONCLUSIONS: The finding of a direct pathway from CI to externalising behaviours is novel, as is the indirect role of CI in internalising symptomatology. Of the three cognitive mechanisms examined, only CI significantly predicted externalising symptoms. Possible implications for interventions and supports targeting these cognitive processes in ASD are discussed.

Associations between theory of mind and conduct problems in autistic and nonautistic youth.

Many autistic young people exhibit co-occurring behavior difficulties, characterized by conduct problems and oppositional behavior. However, the causes of these co-occurring difficulties are not well understood. Impairments in theory of mind (ToM) are often reported in autistic individuals and have been linked to conduct problems in nonautistic individuals. Whether an association between ToM ability and conduct problems exists in autistic populations, whether this association is similar between individuals who are autistic versus nonautistic, and whether these associations are specific to conduct problems (as opposed to other domains of psychopathology) remains unclear. ToM ability was assessed using the Frith-Happé Triangles task in a pooled sample of autistic (N = 128; mean age 14.78 years) and nonautistic youth (N = 50; mean age 15.48 years), along with parent-rated psychiatric symptoms of conduct problems, hyperactivity/inattention and emotional problems. Analyses tested ToM ability between autistic versus nonautistic participants, and compared associations between ToM performance and conduct problems between the two groups. Where no significant group differences in associations were found, the pooled association between ToM and conduct problems was estimated in the combined sample. Results showed no evidence of moderation in associations by diagnostic status, and an association between poorer ToM ability and higher levels of conduct problems, hyperactivity/inattention and emotional problems across the total sample. However, these associations became nonsignificant when adjusting for verbal IQ. Results provide support for theoretical models of co-occurring psychopathology in autistic populations, and suggest targets for intervention for conduct problems in autistic youth. LAY SUMMARY: Many young people with autism spectrum disorder show co-occurring behavior problems, but the causes of these are not well understood. This paper found an association between difficulties recognizing what others think and intend (so-called "theory of mind") in a simple animated task, and emotional and behavioral problems in autistic and nonautistic young people. However, a substantial part of this association was explained by individual differences in verbal ability. These findings may have implications for intervention efforts to improve young people's mental health.

Trajectories of emotional and behavioral problems from childhood to early adult life.

LAY ABSTRACT: Although mental health problems are common in autism, relatively little is known about their stability and the factors that influence their persistence or change over the life-course. To address this, we use data from the Special Needs and Autism Project (SNAP) cohort studied at three time-points from 12 to 23 years. Using the parent-reported Strengths and Difficulties Questionnaire (SDQ) domains of conduct, emotional, and ADHD symptoms, we evaluated the role of child, family, and contextual characteristics on these three trajectories. Symptoms decreased significantly over time for all three domains, but many participants still scored above the published disorder cutoffs. Individuals showed high levels of persistence. Higher initial adaptive function and language levels predicted a greater decline in conduct and ADHD symptoms. In contrast, higher language functioning was associated with higher levels of emotional symptoms, as was lower levels of autism symptom severity and higher parental education. Those with higher neighborhood deprivation had higher initial conduct problems but a steeper decline over time. Our findings highlight that it may be possible to accurately predict mental health trajectories over this time period, which could help parents and carers in planning and help professionals target resources more efficiently.

Trajectories in Symptoms of Autism and Cognitive Ability in Autism From Childhood to Adult Life: Findings From a Longitudinal Epidemiological Cohort.

OBJECTIVE: For the first time, we use a longitudinal population-based autism cohort to chart the trajectories of cognition and autism symptoms from childhood to early adulthood and identify features that predict the level of function and change with development. METHOD: Latent growth curve models were fitted to data from the Special Needs and Autism Project cohort at three time points: 12, 16, and 23 years. Outcome measures were IQ and parent-reported Social Responsiveness Scale autism symptoms. Of the 158 participants with an autism spectrum disorder at 12 years, 126 (80%) were reassessed at 23 years. Child, family, and contextual characteristics obtained at 12 years predicted intercept and slope of the trajectories. RESULTS: Both trajectories showed considerable variability. IQ increased significantly by a mean of 7.48 points from 12 to 23 years, whereas autism symptoms remained unchanged. In multivariate analysis, full-scale IQ was predicted by initial language level and school type (mainstream/specialist). Participants with a history of early language regression showed significantly greater IQ gains. Autism symptoms were predicted by Social Communication Questionnaire scores (lifetime version) and emotional and behavioral problems. Participants attending mainstream schools showed significantly fewer autism disorder symptoms at 23 years than those in specialist settings; this finding was robust to propensity score analysis for confounding. CONCLUSION: Our findings suggest continued cognitive increments for many people with autism across the adolescent period, but a lack of improvement in autism symptoms. Our finding of school influences on autism symptoms requires replication in other cohorts and settings before drawing any implications for mechanisms or policy.

Exploring the neurocognitive correlates of challenging behaviours in young people with autism spectrum disorder.

Many young people with autism spectrum disorder display 'challenging behaviours', characterised by externalising behaviour and self-injurious behaviours. These behaviours can have a negative impact on a young person's well-being, family environment and educational achievement. However, the development of effective interventions requires greater knowledge of autism spectrum disorder-specific models of challenging behaviours. Autism spectrum disorder populations are found to demonstrate impairments in different cognitive domains, namely social domains, such as theory of mind and emotion recognition, but also non-social domains such as executive functioning and sensory or perceptual processing. Parent-rated self-injurious behaviour and externalising behaviours, and neurocognitive performance were assessed in a population-derived sample of 100 adolescents with autism spectrum disorder. Structural equation modelling was used to estimate associations between cognitive domains (theory of mind, emotion recognition, executive functioning and perceptual processing) and self-injurious behaviour and externalising behaviours. Poorer theory of mind was associated with increased self-injurious behaviour, whereas poorer perceptual processing was associated with increased externalising behaviours. These associations remained when controlling for language ability. This is the first analysis to examine how a wide range of neurocognitive domains relate to challenging behaviours and suggests specific domains that may be important targets in the development of interventions in adolescents with autism spectrum disorder.

Childhood disintegrative disorder and autism spectrum disorder: a systematic review.

AIM: In an attempt to clarify the debate surrounding the diagnostic validity of childhood disintegrative disorder (CDD), we systematically reviewed its characteristics and compared it with autism spectrum disorder (ASD). METHOD: Four databases were searched (PubMed, PsycINFO, Embase, and Web of Science). Included articles had participants with CDD, as defined by symptoms present in the criteria of the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision and the International Classification of Diseases, 10th Revision. Comparison groups were those with ASD and ASD with regression. Case studies were excluded. RESULTS: Twenty articles, comprising 96 participants with CDD (80 males, 16 females), were included. Most studies were cross-sectional. The prevalence of CDD was 1.1 to 9.2 per 100 000, with a mean age at regression of 3 years 2 months (SD 1y 1mo), with a range of 2 years to 7 years. In addition to core CDD symptoms, most had intellectual impairment, anxiety, challenging behaviours, and regressed in toileting skills. Participants with CDD and ASD shared core diagnostic and extra-diagnostic features. However, participants with CDD seemed to have more severe symptoms and a different symptom profile, including apparently typical development before regression, faster regression, more affective symptoms, and more global developmental deficit. Possible genetic and autoimmune neurobiological mechanisms were identified. INTERPRETATION: There is limited high-quality evidence describing the aetiology and outcomes of CDD. However, given the qualitative and prognostic differences between ASD and CDD, we recommend that future diagnostic criteria should distinguish late-onset regression.

TRASTORNO DESINTEGRATIVO INFANTIL Y TRASTORNO DEL ESPECTRO AUTISTA: UNA REVISIÓN SISTEMÁTICA: OBJETIVO: En un intento de aclarar el debate que rodea la validez diagnóstica del trastorno desintegrativo infantil (TDI), revisamos sistemáticamente sus características y lo comparamos con el trastorno del espectro autista (TEA). MÉTODO: Se realizaron búsquedas en cuatro bases de datos (PubMed, PsycINFO, Embase y Web of Science). Los artículos incluidos tenían participantes con TDI, según lo definido por los síntomas presentes en los criterios del Manual diagnóstico y estadístico de trastornos mentales, Cuarta edición, Revisión de texto y Clasificación internacional de enfermedades, Décima revisión. Los grupos de comparación fueron aquellos con TEA y TEA con regresión. Se excluyeron los estudios de caso. RESULTADOS: Se incluyeron 20 artículos, con 96 participantes con TDI (80 varones y 16 mujeres). La mayoría de los estudios fueron de corte transversal. La prevalencia de TDI fue de 1,1 a 9,2 por 100.000, con una edad media de regresión de 3 años a 2 meses (DS 1 años 1 mes), con un rango de 2 años a 7 años. Además de los síntomas centrales de la TDI, la mayoría tenía deterioro intelectual, ansiedad, comportamientos desafiantes y regresión en las habilidades para ir al baño. Los participantes con TDI y TEA compartieron funciones básicas comunes de diagnóstico y de diagnóstico adicional. Sin embargo, los participantes con TDI parecían tener síntomas más graves y un perfil de síntomas diferente, incluido un desarrollo aparentemente típico antes de la regresión, una regresión más rápida, síntomas más afectivos y un déficit de desarrollo más global. Se identificaron posibles mecanismos genéticos y autoinmunes neurobiológicos. INTERPRETACIÓN: Existe una evidencia limitada de alta calidad que describe la etiología y los resultados de la TDI. Sin embargo, dadas las diferencias cualitativas y pronósticas entre la TEA y la TDI, recomendamos que los criterios diagnósticos futuros distingan la regresión de inicio tardío.

TRANSTORNO DESINTEGRATIVO DA INFÂNCIA E TRANSTORNO DO ESPECTRO AUTISTA: UMA REVISÃO SISTEMÁTICA: OBJETIVO: Na tentativa de esclarecer o debate em torno da validade diagnóstica do transtorno desintegrativo da infância (TDI), nós revisamos sistematicamente suas características e as comparamos com o transtorno do espectro autista (TEA). MÉTODO: Quatro bases de dados foram pesquisadas (PubMed, PsycINFO, Embase, e Web of Science). Os artigos incluídos tinham participantes com TDI, como definido pelos sintomas presentes nos critérios do Manual Diagnóstico e Estatístico de Transtornos Mentais, quarta edição, com revisão do texto, e na Classificação Internacional de Doenças, 10a edição. Grupos de comparação foram aqueles com TEA e TEA com regressão. Estudos de caso foram excluídos. RESULTADOS: Vinte artigos, incluindo 96 participantes com TDI (80 do sexo masculino, 16 do sexo feminino), foram incluídos. A maior parte dos estudos era transversal. A prevalência de TDI foi de 1,1 a 9,2 por 100.000, com idade média de regressão de 3 anos e 2 meses (DP 1a 1m), com variação de 2 anos a 7 anos. Além dos sintomas centrais de TDI, a maioria tinha deficiência intelectual, ansiedade, comportamentos desafiadores, e regressão na habilidade de usar o banheiro. Participantes com TDI e TEA compartilham aspectos diagósticos e extra-diagnósticos centrais. No entanto, os participantes com TDI pareceram ter sintomas mais severos e um perfil diferente de sintomas, incluindo desenvolvimento aparentemente típico antes da regressão, regressão mais rápida, mais sintomas afetivos, e maior déficit global do desenvolvimento. Possíveis mecanismos neurobiológicos genéticos e autoimunes foram identificados. INTERPRETAÇÃO: Há evidência limitada de alta qualidade descrevendo a etiologia dos resultados do TDI. No entanto, dadas as diferenças qualitativas e prognósticas entre TEA e TDI, recomendamos que futuros critérios diagnósticos distinguam a regressão de início tardio.

Factors associated with pain in adolescents with bilateral cerebral palsy.

AIM: We explored factors associated with pain and its severity in a population cohort of young people with bilateral cerebral palsy, comparing parent/carer and young people self-reports. METHOD: Of 278 survivors (mean age 16y 8mo, SD 1y 4mo, range 13y 8mo-19y 3mo) from the South Thames in the Study of Hips and Physical Experience cohort of 338 young people with bilateral cerebral palsy, 212 parents/carers and 153 young people completed questionnaires on the presence, severity, timing, site, associated factors, impact, and treatment of pain. RESULTS: Seventy per cent of parents/carers reported pain within 3 months, 59% the previous week, and 50% the previous day with 56% reporting 'regularly experienced'. Of young people able to do so, 63% reported pain within 3 months, 50% the previous week, and 42% the previous day, with 48% reporting regular pain. There was strong agreement between the parent/carer and young people, reporting pain severity over the previous 3 months. Pain severity was associated with increased motor impairment and comorbidity, particularly constipation, spasticity, equipment use, and higher emotional score, but not sex, intellectual disability, speech, or maternal education. Multiple sites of musculoskeletal pain were reported in two-thirds of individuals. Pain was associated with voluntary movement in individuals with less motor impairment and with being moved in those with severe motor impairment. Greater pain severity had a negative effect on both physical and psychological quality of life. INTERPRETATION: Increasing awareness of the comorbidities in cerebral palsy may aid effective treatment, reducing pain experienced by young people with cerebral palsy. WHAT THIS STUDY ADDS: Regular moderate or severe pain is reported in young people with bilateral cerebral palsy (CP) in all Gross Motor Function Classification System levels. Pain is reported more frequently in young people who are non-ambulant. General ill health is strongly associated with severity of pain after controlling for severity of CP, especially constipation. Pain occurs most often in ambulant young people during voluntary activity and in those who are non-ambulant when being moved. There is strong agreement between parents/carers and young people about pain presence and severity.

FACTORES ASOCIADOS AL DOLOR EN ADOLESCENTES CON PARÁLISIS CEREBRAL BILATERAL: OBJETIVO: Exploramos los factores asociados con el dolor y su gravedad en una cohorte poblacional de jóvenes con parálisis cerebral bilateral, comparando los autoinformes de padres/cuidadores y jóvenes. MÉTODO: De 278 sobrevivientes (edad media 16 años 8 meses, DS 1 año 4 meses, rango 13 años 8 meses - 19 años 3 meses) del Támesis Meridional, en el Estudio de caderas y experiencia física de 338 jóvenes con parálisis cerebral bilateral, 212 padres/cuidadores y 153 los jóvenes completaron cuestionarios sobre la presencia, la gravedad, el momento, el sitio, los factores asociados, el impacto y el tratamiento del dolor. RESULTADOS: El 70% de los padres/cuidadores reportaron dolor dentro de los 3 meses, el 59% en la semana anterior y el 50% en el día anterior, y el 56% informaron tener dolor "como experiencia regular". De los jóvenes que pueden hacerlo, 63% reportaron dolor dentro de los 3 meses, 50% la semana anterior y 42% el día anterior, con 48% reportando dolor regular. Hubo un fuerte acuerdo entre los padres/cuidadores y los jóvenes, que informaron sobre la gravedad del dolor durante los 3 meses anteriores. La gravedad del dolor se asoció con un aumento del deterioro motor y la comorbilidad, en particular el estreñimiento, la espasticidad, el uso de equipos y una mayor puntuación emocional, pero no el sexo, la discapacidad intelectual, el habla o la educación materna. Se reportaron múltiples sitios de dolor musculoesquelético en dos tercios de los individuos. El dolor se asoció con el movimiento voluntario en individuos con menos discapacidad motora y con el traslado en personas con insuficiencia motora grave. Una mayor gravedad del dolor tuvo un efecto negativo en la calidad de vida tanto física como psicológica. INTERPRETACIÓN: Un mayor conocimiento de las comorbilidades en la parálisis cerebral puede ayudar a un tratamiento eficaz, reduciendo el dolor que experimentan los jóvenes con parálisis cerebral.

FATORES ASSOCIADOS COM DOR EM ADOLESCENTES COM PARALISIA CEREBRAL BILATERAL: OBJETIVO: Exploramos os fatores associados com dor e sua severidade em uma coorte de jovens com paralisia cerebral bilateral, comparando auto-relatos dos jovens e relatos dos pais/cuidadores. MÉTODO: Dos 278 sobreviventes (média de idade 16a 8m, DP 1a 4m, variação 13a 8m-19a 3m) de South Thames, da coorte de 228 jovens com paralisia cerebral bilateral do Estudo dos Quadris e Experiência Física, 212 pais/cuidadores e 153 jovens completaram os questionários de presença, severidade, momento, local, fatores associados, impacto, e tratamento da dor. RESULTADOS: Setenta por cento dos pais/cuidadores relataram dor em 3 meses, 59% na semana anterior, e 50% no dia anterior, com 56% indicando "sente regularmente". Dos jovens capazes de fazê-lo, 63% reportaram dor em 3 meses, 50% na última semana, e 42% no dia anterior, com 48% reportando dor regular. Houve forte concordância entre pais/cuidadores e jovens, relatando severidade da dor nos 3 meses anteriores. A severidade da dor se associou com maior comprometimento motor e comorbidades, particularmente constipação, espasticidade, uso de equipamentos, e maior pontuação emocional, mas não com o sexo, deficiência intelectual, fala, ou educação materna. Múltiplos locais de dor músculo-esquelética foram relatados em dois terços dos indivíduos. A dor foi associada com movimento voluntário em indivíduos com menor comprometimento motor, e com ser movido naqueles com comprometimento severo. Maior severidade da dor teve efeito negativo tanto na qualidade de vida física e psicológica. INTERPRETAÇÃO: Aumentar a conscientização sobre as comorbidades em paralisia cerebral pode ajudar tratamentos efetivos, reduzindo a dor sentida por jovens com paralisia cerebral.

Pathological Demand Avoidance: symptoms but not a syndrome.

Pathological (or extreme) demand avoidance is a term sometimes applied to complex behaviours in children within-or beyond-autism spectrum disorder. The use of pathological demand avoidance as a diagnosis has, at times, led to altered referral practice and misunderstandings between professionals and the families of patients. In our Viewpoint, we reviewed the current literature and conclude that the evidence does not support the validity of pathological demand avoidance as an independent syndrome. Nevertheless, the use of the term highlights an important known range of co-occurring difficulties for many children with autism spectrum disorder that can substantially affect families. We explore how these difficulties can best be understood through understanding of social, sensory, and cognitive sensitivities in autism spectrum disorder, identification of frequently occurring comorbid conditions, and assessment of how these problems interact within the child's social environment. Such understanding should then inform individualised management strategies for children and families, and in social settings, such as education. It is crucial that a shared understanding is achieved between professionals and families in this area.